Living with hepatitis C: the meaning of illness

Abstract

 

This thesis is a qualitative sociological exploration into the concerns and experiences of twenty people living with hepatitis C in Auckland, New Zealand. Within New Zealand hepatitis C is a chronic and stigmatised disease which primarily affects intravenous drug users and people who received blood transfusions prior to 1992. Although at a conservative estimate 35,000 people in New Zealand live with the disease it is an issue that receives very little media, policy or research attention. Official discourse about hepatitis C is one of epidemiology, medical treatments and harm minimisation. Scant research attention has been paid to the lived experience of infected individuals: their everyday experience, social supports and perceived barriers towards treatment. These are important issues that this thesis seeks to address.

 

Participants were sourced from Narcotics Anonymous and through the Hepatitis C Resource centre. Major themes that arose throughout their interviews were those of: the day-to-day experience of living with hepatitis C, relationships, isolation and support, the medical encounter and treatment. Each one of these themes forms a chapter of the thesis. Running throughout the chapters are the theoretical influences of narrative and stigma, in particular that of Frank’s three narrative types restitution, chaos and quest. Franks narrative theory was utilised to make sense of and articulate the difference in the way participants from the two groups interviewed. Congruent with narrative theory is the emphasis placed on the participants’ voice throughout the thesis. Through the use of direct quotation I attend to the experiential narrative of illness rather than the official medical discourse of disease. In this way I hope to humanise the illness and help effect a move away from the hepatitis C epidemic as one of ‘silence’ in New Zealand.